In response to Chris.
Possibly something like attempting a denial of service attack?
08:12 PM - Mar 01, 2023
In response to Sally Kuhlman.
I know. We knew the shit spackled muppet farts would try, tho. Quick snap on the reporting by as many as possible should hopefully take care of it.
07:43 PM - Mar 01, 2023
In response to Sally Kuhlman.
Troll. Manipulating the platform. He's been reported by many.
07:32 PM - Mar 01, 2023
In response to Lola.
May his reign be extraordinarly short and may the UK turf the monarchy before William can be punted onto the throne.
04:52 PM - Mar 01, 2023
In response to Eugene.
Could also have banned camp, which is a Narnia like trip thru a wardrobe to a library with all the banned books in it.
10:34 PM - Feb 28, 2023
In response to Patricia George.
Howdy! I just posted about this as well, as my daughter lives with more than one rare disease dx. I found my bout with HP listed in the NORD database as rare too, though I didn't think it was. Anyway, thanks for #showingyourstripes !
12:56 PM - Feb 28, 2023
In response to Christopher Bouzy.
I vet, still. A couple of days ago, I was followed by what I call a collector. They were following more than 70K ppl (how is that even possible?). I've no desire to be "collected" as some sort of.......well, whatever it is. I blocked them. I've blocked early & fast, particularly the drama.
12:51 PM - Feb 28, 2023
In response to Suz Kantner ?.
Rare Disease Day is the #Opportunity to #advocate for rare diseases as a #humanrights #priority at local, national and international level as we work towards a more #Inclusive #Society .
12:30 PM - Feb 28, 2023
In response to Suz Kantner ?.
around the #world and their families and #carers .
The #longterm cause of the Rare Disease Day campaign is to achieve #equitable access to #diagnosis , treatment, health and social care and social opportunity for people affected by a rare disease.
The #longterm cause of the Rare Disease Day campaign is to achieve #equitable access to #diagnosis , treatment, health and social care and social opportunity for people affected by a rare disease.
12:30 PM - Feb 28, 2023
In response to Suz Kantner ?.
frequently #lifethreatening aspects of the disease.
The fact that there are often no #existing #effective #cures adds to the high level of #pain and #suffering endured by patients and their families.
Rare Disease Day raises #awareness for the 300 million people living with rare disease
The fact that there are often no #existing #effective #cures adds to the high level of #pain and #suffering endured by patients and their families.
Rare Disease Day raises #awareness for the 300 million people living with rare disease
12:28 PM - Feb 28, 2023
In response to Suz Kantner ?.
Relatively common symptoms can hide underlying rare diseases leading to #misdiagnosis and delaying treatment. Quintessentially #disabling , the patient's quality of life is affected by the #lack or #loss of #autonomy due to the #chronic , #progressive , #degenerative , and
12:27 PM - Feb 28, 2023
In response to Suz Kantner ?.
Over 6000 rare diseases are characterized by a #broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient #suffering from the same disease.
72% of the diseases are #genetic and almost 1 out of 5 #cancers is rare.
72% of the diseases are #genetic and almost 1 out of 5 #cancers is rare.
12:26 PM - Feb 28, 2023
In response to Suz Kantner ?.
patient to patient suffering from the same disease.
#research needs to be #International to ensure that #experts , #researchers and #clinicians are connected.
Rare diseases – by the numbers
- 300M people with rare disease
- 3.5 – 5.9% of the population
- 72% are genetic diseases
#research needs to be #International to ensure that #experts , #researchers and #clinicians are connected.
Rare diseases – by the numbers
- 300M people with rare disease
- 3.5 – 5.9% of the population
- 72% are genetic diseases
12:25 PM - Feb 28, 2023
In response to Suz Kantner ?.
and #financial burdens on #patients .
Owing to the broad #diversity of #disorders and relatively common symptoms which can hide underlying rare diseases, initial #misdiagnosis is common. In addition, symptoms differ not only from disease to disease, but also from
Owing to the broad #diversity of #disorders and relatively common symptoms which can hide underlying rare diseases, initial #misdiagnosis is common. In addition, symptoms differ not only from disease to disease, but also from
12:22 PM - Feb 28, 2023
In response to Suz Kantner ?.
The lack of #scientificknowledge and #qualityinformation on the disease often results in a #delay in #diagnosis .
The need for #appropriate quality health care engenders #inequalities and #difficulties in access to #treatment and #care . This often results in heavy #Social
The need for #appropriate quality health care engenders #inequalities and #difficulties in access to #treatment and #care . This often results in heavy #Social
12:21 PM - Feb 28, 2023
In response to Suz Kantner ?.
#clinicians , #policymakers , #industry representatives and the general #public , can #participate in raising awareness and taking action today for this #vulnerablepopulation who require #immediate and {#id:160459#} attention.
What are the #Universal #challenges faced by those living with a rare disease?
What are the #Universal #challenges faced by those living with a rare disease?
12:19 PM - Feb 28, 2023
In response to Suz Kantner ?.
Rare Disease Day provides an #energy and focal point that enables rare diseases #advocacy work to progress on the #Local , #national and #International levels.
Though Rare Disease Day is patient-led, everyone, including individuals, families, #caregivers , #healthcare professionals, #researchers ,
Though Rare Disease Day is patient-led, everyone, including individuals, families, #caregivers , #healthcare professionals, #researchers ,
12:18 PM - Feb 28, 2023
In response to Suz Kantner ?.
rare diseases, working towards #equity in #socialopportunity , #healthcare , and #accesstodiagnosis and #therapies for people living with a rare disease. Since its creation in 2008, Rare Disease Day has played a #critical part in building an international rare disease community that is multi-disease,
12:14 PM - Feb 28, 2023
In response to Dawna.
Same doof that called false teeth dentures, instead of substitooths.
09:34 PM - Feb 27, 2023
In response to Ed Lynch.
What in the minimally melanated, yogurt yodeling, Crest extreme whitening toothpaste nonsense?! Identified as Black?
11:45 AM - Feb 27, 2023
In response to Khrissy Choate.
Yup. I didn't know until my daughter let me know - when she was still on the 🐦 app, she had a mutual who used a reader & they let us know, so I've been doing my level best to remember.
Thanks for sending in the bug report. Hopefully they're able to change it.
Thanks for sending in the bug report. Hopefully they're able to change it.
08:52 PM - Feb 26, 2023
In response to Khrissy Choate.
Only issue is, the software messes hashtags up. If you're the first person to post the # you can capitalize each word. But, if you're not, it automatically makes the word lowercase. I've tried editing it and it doesn't change. May need to ask for this to be a #FeatureChange .
08:46 PM - Feb 26, 2023
In response to Scott Johnson.
Wait until her row is asleep and then crazy glue her feet together.
01:29 PM - Feb 26, 2023
